Overview
The NCCN/FACT Hepatobiliary Cancer Symptom Index-18 assesses symptoms of importance to patients with hepatobiliary and pancreatic cancers and demonstrates promising measurement properties. The scale is a good candidate for brief symptom assessment in clinical trials. As part of a larger study in collaboration with the NCCN, 50 people (60% male, 80% Caucasian, average age 60.4 yrs) with Stage 3 or 4 hepatobiliary or pancreatic cancer were recruited. Participants generated and ranked up to 10 important symptoms and concerns that physicians should monitor when assessing the value of chemotherapy. Patients were also able to provide open-ended, qualitative information that was evaluated systematically. Ten expert physicians also provided input on priority symptoms. The resulting 18-item NFHSI (NFHSI-18) demonstrated high internal consistency (α = 0.89) and moderate to strong correlations with measures of physical well-being (ρ = 0.76), emotional well-being (ρ = 0.52), and functional well-being (ρ = 0.57). Scores were also highly correlated with the original hepatobiliary scale of the FACT-Hep (ρ =0.82; all p<0.001). Compared to patients with better performance status, patients with poor performance status had worse NFHSI-18 symptom scores, F (3, 47) = 9.74; p=0.0003.
MEASURE NAME:
National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Hepatobiliary Cancer Symptom Index - 18 Item Version (NFHSI-18)
VERSION:
2
NUMBER OF ITEMS:
18
PATIENT POPULATION:
Hepatobiliary cancer patients 18 years and older
RECALL PERIOD:
Past 7 days
RESPONSE SCALE:
5 point Likert-type scale
DATA COLLECTION:
Paper and electronic
ADMINISTRATION:
Self-administration and interview when applicable
SUBSCALE DOMAINS:
Disease-Related Symptoms – Physical, Disease-Related Symptoms – Emotional, Treatment Side-Effects, Function/Well-Being
TIME FOR COMPLETION:
5-10 minutes
SCORING:
Manual scoring template, some items are reverse scored. Subscale scores and total scores possible.
RELATED MEASURES:
Language Availability
Available translations of the NFHSI-18 can be obtained by registering for permission. Users are not permitted to translate the NFHSI-18 without permission from FACIT.org. Permission from FACIT.org to translate the NFHSI-18 may also be contingent upon timeline expectations and availability of FACIT staff. Translations must undergo a rigorous methodology under the guidance of FACIT.org which includes multiple translators, QA steps and cognitive interviews with patients. For commercial use, FACITtrans is the approved translation vendor to translate the FACIT measurement system.
Please contact us for more information.
Licensing
Licensing fees are assessed on a per trial/per measure basis for commercial use. There is no fee for use of the English version, but a license should be obtained.
Non-commercial use is assessed on a case-by-case basis. Licensing fees are typically not applied to investigator-initiated research, students, or clinical use.
To license an available version of this measure for commercial or non-commercial use, please complete our registration form. All of the information provided in the form will be kept strictly confidential. For questions, please contact us.
Selected References
Butt, Z., Parikh, N.D., Beaumont, J. L., Rosenbloom, S. K., Syrjala, K. L., Abernethy, A. P., Benson, A. B., & Cella, D. Development and validation of a symptom index for advanced hepatobiliary and pancreatic cancers: The NCCN-FACT Hepatobiliary-Pancreatic Symptom Index (NFHSI). Cancer 2012; 118(23): 5997-6004.
Cella, D., Paul, D., Yount, S., Winn, R., Chang, C-H, Banik, D., & Weeks, J. What are the most important symptom targets when treating advanced cancer? A survey of providers in the National Comprehensive Cancer Network (NCCN). Cancer Investigation 2003; 21(4): 526-535. doi: 10.108/CNV-120022366.
Cella, D., Rosenbloom, S., Beaumont, J., Yount, J., Paul, D., Hampton, D., Abernethy, A., Jacobsen, P., Syrjala, K., & Von Roenn, J. Development and validation of 11 symptom indexes to evaluate response to chemotherapy for advanced cancer. Journal of the National Comprehensive Cancer Network; 2011; 9(3): 268-278. doi: 10.6004/jnccn.2011.0026.
Rosenbloom, S., Yount, S., Yost, K., Hampton, D., Paul, D., Abernethy, A., Jacobsen, P., Syrjala, K., Von Roenn, J., Cella, D. Development and validation of eleven symptom indices to evaluate response to chemotherapy for advanced cancer: Measurement compliance with regulatory demands. Farquhar, I., Summers, K., Sorkin, A. (Eds.). The Value of Innovation: Impacts on Health, Life Quality and Regulatory Research. Emerald Group Publishing Inc. 2007; 16: 53-66. doi: 10.1016/S0194-3960(08)16003-6.
Yount, S., Cella, D., Webster, K., Heffernan, N., Chang, C.-H., Odom, L., & van Gool, R. Assessment of patient-reported clinical outcome in Pancreatic and other Hepatobiliary Cancers: The FACT Hepatobiliary Symptom Index. Journal of Pain & Symptom Management 2002; 24(1), 32-44. doi: 10.1016/S0885-3924(02)00422-0.
Bonomi, A.E., Cella, D.D., Hahn, E.A., Bjordal, K., Sperner, B., Gangeri, L., Bergman, B., Willems, J., Hanquet, P., & Zittoun, R. Multilingual translation of the Functional Assessment of Cancer Therapy (FACT) quality of life measurement system. Quality of Life Research 1996; 5: 309-320.
Eremenco, S., Arnold, B., Cella, D. A comprehensive method for the translation and cross-cultural validation of health status questionnaires. Evaluation & the Health Professions 2005; 28(2): 212-232.
Webster K., Cella D., Yost K. The Functional Assessment of Chronic Illness Therapy (FACIT) measurement system: Properties applications, and interpretation. Health and Quality of Life Outcomes 2003; 1(1): 79-85.
Yost K.J., Eton D.T. Combining distribution- and anchor-based approaches to determine minimally important differences: The FACIT experience. Evaluation & the Health Professions 2005; 28(2): 172-191.
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